“It’s a difficult journey and everyone deals with it differently.” – Jessica Rothe, Duchenne muscular dystrophy parent and PTC peer navigator
For Jessica Rothe, adjusting to her son Nathan’s Duchenne muscular dystrophy (DMD) diagnosis wasn’t easy. Her extended family had a really difficult time accepting the diagnosis. The denial resulted in isolation for Jessica, her husband and Nathan.
Nathan had been slow to walk and had never crawled. He couldn’t learn to do basic play activities like jumping rope. Physical therapists treated Nathan over a period of six weeks, but they couldn’t get Nathan’s muscle to tone up. A visit to the neurologist resulted in tests that showed muscular dystrophy, and then further tests that isolated the type of muscular dystrophy as the rare disease Duchenne muscular dystrophy. Nathan was just five years old during what Jessica calls ”an extremely painful, devastating time.”
Finding support in others helped get the Rothe family to where they are today: Nathan is enjoying school (about to head off to college) and is a passionate tenor vocalist. Church, neighbors and choir parents have been unexpectadly generous with encouragement. That gift of support from others inspired Jessica to become a PTC peer navigator – a Duchenne parent that helps other Duchenne families find the resources they need to ensure the best quality of life for themselves and their child(ren) with Duchenne.
Jessica recounts a ”scary and overwhelming” experience during diagnosis. “I like to share my positive experiences,” she says.
”I had a parent call me three times and just cry and thank me for being there. I was the first DMD parent she’d talked to since diagnosis three years ago. It’s a difficult journey and everyone deals with it differently,” she explains.
For more information or to connect with a Duchenne peer navigator, email peernaviator@ptcbio.com.